The article itself is particularly badly written if I'm honest, so I would like to share my own account..
Dad was a kind, gentle man, incredibly gifted, logical, technical. A senior reliability engineer working rocket and missile systems... "Basically our father is a rocket scientist" me and my brother would joke..
He had been gaining weight and suffering health problems for some time before he got really ill. He ballooned a bit in his final years, but facially and in the abdomen as well as a fatty hump between the shoulders on his back. His legs and arms were always fairly normal looking..
He had a growing increasingly cantankerous in his later years, but nothing that seemed a major psychiatric cause for concern.
One day he left for work, as normal, got to work, and collapsed that day while there. He couldn't be woken up by the paramedics, and was hospitalised. When he eventually woke up, it was as if he had suffered some kind of mental breakdown. He was saying strange things, and appeared to be suffering bouts of amnesia as well as paranoia. He escaped his ward I think several times, and at one point failed to recognise my mum. I was away finishing uni at the time, so most of this is how I remember hearing it..
He came home after a short stay in hospital and appeared to make good progress with doctors still thinking it was a mental breakdown or psychotic episode..
Then the truly terrifying bit... As if a very slow second wave hit, he began to show signs that something was wrong. His driving became increasingly scary (yes he was deemed safe to drive) his focus was off, his logic started to go, he began to buy things impulsively, and randomly, then buy the same thing again. He was slowly going baserk. Even when I visited, I knew something was seriously wrong and I was scared of him! We were all scared of him and what he might do next! It was like living with maniac, and he was completely oblivious! He could 100% not see anything wrong with himself, he couldn't even wire a plug properly (and he was a trained electronics engineer for goodness sake!
As his wierd behaviour got slowly worse, it became apparent that certain triggers (such as my mum getting cross and saying something he didn't want to hear) would send him into a trance like state. I can only described this as altered consciousness. He would slump or fall, eyes closed, body limp. You could pinch him and get no response, lift his eyelids, slap him on the cheeks, but with no response. This would go on for minutes not seconds until you went to walk away saying something abrupt like 'OKAY WE ARE LEAVING NOW!' Just like that he would snap out of it. He would claim he was never out of it at all, and heard every word (even recounting what you had said during the episode) Of course every time the doctors visited this wouldn't happen at first, but eventually it did, and they were absolutely gobsmacked!
He was then sectioned again and taken into psychiatric care where his behaviour continued to get more and more bizarre. He would escape from the Premesis and somehow manage to wander to the shops. We once had to drive up to help search for him.. we found him, with bags full of cracked eggs and other strange items. He grew a beard, began smoking, and continued to have frequent bouts of strange altered consciousness. The doctors were dumbfounded, which is why WE began frantically searching the internet for something, anything like it. We put all his previous symptoms in, and cushings/pituitary disorders kept coming up. The breakthrough was when my mother found a illustrations of a human with Cushing's disease along with a side and front profile of a woman with a severe case. Our mouths fell open... The diagrams were as if someone had sketched my father, and the woman looked like his identical twin!
We took this to show the doctors, and that lead to his tests, scans and eventual diagnosis.
In the end, with the right medication, we got dad back for a few months before the operation, albeit by now in poor physical health. By the time he went for his op, he could barely walk and I had to push him around in a wheelchair when I visited. He was just too weak to survive the op, and deteriorated afterwards. He died of massive nasal bleed from a major artery rupture.
Tragically, the post op test results showed signs of his pituitary hormone levels returning to normal, but it just wasn't meant to be.
My dad's demise was just so incredibly strange (even by Cushing's disease standards) with so many questions left unanswered, and perhaps there was something else at play other than just the Cushing's?? We'll never know, and we just try as family to go on remembering him as the brilliant and gifted man he was when he was well.
I have typed my personal account up on Father's Day week in the hopes that it may help someone else out there one day.
Family's Despair over Rare Disease
in News Items and Research
Posted
Hi everybody!
I am Andy Goacher (John Goacher's eldest son)
The article itself is particularly badly written if I'm honest, so I would like to share my own account..
Dad was a kind, gentle man, incredibly gifted, logical, technical. A senior reliability engineer working rocket and missile systems... "Basically our father is a rocket scientist" me and my brother would joke..
He had been gaining weight and suffering health problems for some time before he got really ill. He ballooned a bit in his final years, but facially and in the abdomen as well as a fatty hump between the shoulders on his back. His legs and arms were always fairly normal looking..
He had a growing increasingly cantankerous in his later years, but nothing that seemed a major psychiatric cause for concern.
One day he left for work, as normal, got to work, and collapsed that day while there. He couldn't be woken up by the paramedics, and was hospitalised. When he eventually woke up, it was as if he had suffered some kind of mental breakdown. He was saying strange things, and appeared to be suffering bouts of amnesia as well as paranoia. He escaped his ward I think several times, and at one point failed to recognise my mum. I was away finishing uni at the time, so most of this is how I remember hearing it..
He came home after a short stay in hospital and appeared to make good progress with doctors still thinking it was a mental breakdown or psychotic episode..
Then the truly terrifying bit... As if a very slow second wave hit, he began to show signs that something was wrong. His driving became increasingly scary (yes he was deemed safe to drive) his focus was off, his logic started to go, he began to buy things impulsively, and randomly, then buy the same thing again. He was slowly going baserk. Even when I visited, I knew something was seriously wrong and I was scared of him! We were all scared of him and what he might do next! It was like living with maniac, and he was completely oblivious! He could 100% not see anything wrong with himself, he couldn't even wire a plug properly (and he was a trained electronics engineer for goodness sake!
As his wierd behaviour got slowly worse, it became apparent that certain triggers (such as my mum getting cross and saying something he didn't want to hear) would send him into a trance like state. I can only described this as altered consciousness. He would slump or fall, eyes closed, body limp. You could pinch him and get no response, lift his eyelids, slap him on the cheeks, but with no response. This would go on for minutes not seconds until you went to walk away saying something abrupt like 'OKAY WE ARE LEAVING NOW!' Just like that he would snap out of it. He would claim he was never out of it at all, and heard every word (even recounting what you had said during the episode) Of course every time the doctors visited this wouldn't happen at first, but eventually it did, and they were absolutely gobsmacked!
He was then sectioned again and taken into psychiatric care where his behaviour continued to get more and more bizarre. He would escape from the Premesis and somehow manage to wander to the shops. We once had to drive up to help search for him.. we found him, with bags full of cracked eggs and other strange items. He grew a beard, began smoking, and continued to have frequent bouts of strange altered consciousness. The doctors were dumbfounded, which is why WE began frantically searching the internet for something, anything like it. We put all his previous symptoms in, and cushings/pituitary disorders kept coming up. The breakthrough was when my mother found a illustrations of a human with Cushing's disease along with a side and front profile of a woman with a severe case. Our mouths fell open... The diagrams were as if someone had sketched my father, and the woman looked like his identical twin!
We took this to show the doctors, and that lead to his tests, scans and eventual diagnosis.
In the end, with the right medication, we got dad back for a few months before the operation, albeit by now in poor physical health. By the time he went for his op, he could barely walk and I had to push him around in a wheelchair when I visited. He was just too weak to survive the op, and deteriorated afterwards. He died of massive nasal bleed from a major artery rupture.
Tragically, the post op test results showed signs of his pituitary hormone levels returning to normal, but it just wasn't meant to be.
My dad's demise was just so incredibly strange (even by Cushing's disease standards) with so many questions left unanswered, and perhaps there was something else at play other than just the Cushing's?? We'll never know, and we just try as family to go on remembering him as the brilliant and gifted man he was when he was well.
I have typed my personal account up on Father's Day week in the hopes that it may help someone else out there one day.